High ESR blood test but ANA still within normal range? Every symptom imaginable but Drs dismissing lupus due to ANA results...help?

[Nicnic05]

Has anyone had a diagnosis without high ANA and is there any lupus patients with high ESR bloods? Thanks

[MichelleHarris]

I did and eventually became very unwell with hypothyroidism and then the Levothyroxine caused a Sjogrens like flare with Sjogrens type damage and then Eosinophillic Oesophagitis reaction.

I would get your TPO antibodies tested. I was ill for years and yet they missed hypothyroidism for many years x

[Kelbol1]

Have they also checked your antibodys? I was diagnosed by symptoms and I had a positive double stranded DNA antibody (think that’s what u call it)? They still took a year to confirm diagnosis as they weren’t sure which auto immune disease it was at first. I think everyone is different is there another consultant you can speak to? Good luck with diagnosis

[Hidden]

How high is your high ESR please? I would suggest that you ask about seronegative rheumatic diseases. Rheumatoid arthritis and sjogrens can be seronegative in about 30% of sufferers and high ESR plus symptoms would be how seronegative inflammatory arthritis presents. For example psoriatic arthritis (PsA) is almost always negative in blood but high ESR.

Less common in Lupus I think but still possible. Symptoms could belong to any of these in early stages.

[Nicnic05 in reply to Hidden]

Thank you for the reply. My GP said mine was 27 and a normal range was between 0-15. My ANA bloods increase every time and have done for a year now but are still not high. I’m not sure what ANA is supposed to be but my GP said last year it went in the following trend 3.6, 4.8, 5.7 and now 6.4 so definitely an upward trend but they aren’t concerned. My nails are falling off, my hair is falling out, my whole body aches,I seem to have repeated kidney infections and the rash Over my face and neck but because my ANA bloods are ok no one seems concerned.

[Hidden in reply to Nicnic05]

Well it is good to get copies of blood tests and letters and have a knowledge of your own trends.

.The only thing my antibodies point to is Scleroderma but my histology and symptoms point more to Sjogrens.

So my advice would be to go back to the GP and ask about seronegative rheumatic diseases. But I wouldn't get too hung up on bloodwork because both ESR (and they will say yours isn't necessarily high- my old rheumatologist said he only bothered with numbers over 30) and ANA are very non specific. It's the underlying cause of your symptoms they should be focussing on at this stage.

Good luck!x

[RosieA]

It is no doubt a complex business. I am in the process of being diagnosed. I was diagnosed with seronegative arthritis, as my fingers and toes were swollen and tender, even though all my inflammatory markers were and always have been normal. Now as things have developed other symptoms, including photosensitivity, hair loss, malar rash and ulcers I have features of a connective tissue disease (UCTD). I was ANA +ve and now borderline. So bloods aren't everything but for me, primarily and very fortunately, they show no major organ damage.It has been explained that these diseases are on a spectrum, so I now have to wait and see if I remain stable or it develops more. As many on this forum state it can takes years for diagnosis, for reasons such as mine or from struggling to see the right person / being believed. I very much understand your frustration. I manage as I know that thankfully I am on the right meds.

My consultant also explained that the symptoms are the things they look at mostly. Perhaps ask to be referred based on this - a good place to help you understand blood tests and what they mean is a recent web based event on Lupus UK just on this subject. It was incredibly informative. It would increase your understanding and aid your discussion with your GP. Hope that helps a bit, good luck and keep us informed if you feel able.

[KayHimm]

What do they think is causing the high ESR? Could they be considering other inflammatory diseases?

What are your symptoms? From what I have read, lupus is now not usually diagnosed with negative ANA unless kidney biopsy is positive. But there are other systemic autoimmune diseases.

I bet they will continue to watch you and re-do labs.

Good luck. This is the hardest time - being in the dark.

K